“I want to live, not just survive.”
I saw that on a quote board on Pinterest the other day while looking for a clever motto for my business cards. My medical psychologist had suggested I order some cards to help promote my donation site as well as my blog, and I had found an extraordinarily cheap deal on Vista Print. 250 two sided colored cards for $12? Gee, um, ok!
Anyways, the back of the card had space for a motto and I wanted to find something inspirational for myself, and motivating. When I saw this one, I knew. It’s exactly how I feel. It’s one thing to just overcome my disease and illness, it’s another to be able to live my life with purpose and happiness again.
I’ve been thinking about this a lot recently. In my mom’s letter to me, that I posted on my blog earlier in the week, she wrote that she gets sad when she sees families together, or mother’s walking their strollers. Because she knows that’s an unlikely future for me. My doctors have told me I can’t have children. Physically, yes I could, but to have them I would have to go off all of my medications and treatments completely, which in turn would kill me.
So no family from scratch. Sure I could find a man who already has kids from a previous marriage, or we could adopt. But to have enough energy to raise children, I would most certainly have to be in remission from my Rheumatoid Disease, and no longer fighting cancer. Basically, I’d have to be well again, and I’ve been sick for so long that I’ve forgotten what well feels like. What does no pain feel like? What does it feel like to make it through the day without a hot flash? Or to exist without a daily three hour nap?
I rented a Redbox movie last night due to free coupon I received via email. (I know, I’m cheap. Only using the service when I get freebies. But even a $2 movie is a luxury these days.) Jupiter Ascending. I liked it a lot. Prob cause I’m a sci-fi geek and love anything done by the Wachowsi’s, but also because the special effects kicked ass. Anyways, of course to capture a broader audience they dropped a love story in the mix between the heroine and her sexy hero. Not too mushy, thankfully. But due to my strange mix of emotions lately, I found myself crying while watching it.
See the issue that I’ve been dealing with recently is that I’m going to be 34 in a few months, and I’m still single and alone. Throw a chronic disease into that mix and you have the perfect storm of depression. Dating is hard enough when you’re a regular healthy person. I’ve had my fair share of long term relationships that have clearly not panned out. I’ve been signed up on two online dating sites on and off for the last four years, with no winning results. Although I now have at least three really awful and yet entertaining stories of bad dates. So like I said, dating is hard.
Since my disease got really aggressive, I haven’t been able to keep up with my dating sites. I took a good half year break for awhile as I tried to find my footing with chemotherapy and my many other treatments. But I’m still alone. I have no one to come home to after a bad night in the ER, or receiving another shitty diagnosis. Sure, friends and family are supportive, but it’s not the same. We all know it. I crave the intimacy you have in a significant other.
And now as I get sicker and sicker, it feels like a future with someone is further and further out of reach. Yes, I’ve been on a few dates here and there, but in the course of being honest as soon as I tell someone of my condition their demeanor changes. No one wants to be with someone they view as broken. And it doesn’t matter how much I tell them about my optimism or activity levels. Once they hear “sick”, it’s over.
I find myself wishing I had spent more time when I was younger looking for the right person. Wondering why I substrate it seriously, and of course knowing it was because I thought I had more time. Time. That’s the real issue at the end of the day. I wonder if that’s what deters people. Their conception of loss of time with me. I mean children are off the table before we even get started. They probably see my winced and hear my clicking joints as I get up and down in front of them. I understand that a worse case scenario probably runs through their minds as they think what a future with me could be like. Wheelchair maybe? Endless doctors visits? Pain?
That must be hard for them to see and imagine. But that leaves me alone. I wish someone would look at me and see ME. Not my pain, or my disease, or what my future may hold. Just me. The fact that besides my chronic condition, I love life. I love cooking and baking. I’m a foodie, I love tasting and eating out and having food adventures. I love walks on the beach and swims in the ocean. I love travel and adventure.
I am not Rheumatoid Arthritis.
That is only a part of me. Look deeper and you will see that.
What is the point of going through all these drug trials, chemotherapy, biologic injections, steroid weight gain, losing work, being homeless, having to go through all of this hardship and stress… what is the point of making it to the other side if there is nothing on the other side?
I want to live through this, not just survive it.
I want my disease go into remission. I want to be healthy again. I want to be employed again. I want to be financially independent again. Take trips, and travel through my bucket list. Find a life partner and share my happiness with them.
If I can’t have that, then going through all this pain and awfulness isn’t worth it. I want to know that there is a light at the end of this tunnel.
I want to LIVE, not just survive.
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